As if the stress from having PSC isn’t enough, the stress while waiting for a transplant is also pretty tough. Every single transplant candidate feels depressed and upset. This is a normal reaction to an abnormal condition. You have a right to your feelings. Yet hope can see you through too, so try to keep your mind focused on the goal and work toward that. Click here to learn how others have managed stress.
Talk over your feelings and fears with family and friends; seek professional counseling if you need it. Your medical team can help you with this.
Prepare yourself physically and emotionally for major surgery. It is likely to take a while as you wait on the list and for the right liver. Some PSCers have become even sicker while waiting. Remember, however, that thousands of patients receive liver transplants each year. Some even receive multiple organ transplants, such as liver/kidney. The wait and your deteriorating condition can be worrisome, but try to keep your hope alive.
. . . refuse to go without a fight.
Each person must have a moment of clarity (despite the mental fog) wherein you must decide whether you are just fed up, become depressed, and die for lack of will. Or, you stand up become incensed, pick up the banner of life, and refuse to go without a fight. It is important to take the meds or one may become disadvantaged by depression and all the other side effects of ESLD.
There will be times when the war seems endless, battle after battle is lost (people saying no, being denied, running out of the energy to go on). Each day you wake in a panic wondering what will go wrong this day as they have so many days before.
I started with a big transplant center in California and intended, in parallel, to apply at two others in that state, as well as one in Arizona. The big transplant center was very interested until the insurance issue came up. I had to apply for disability and Medicare. Medicare has a 2-year+ waiting period, just enough time (I thought) for me to cease being a liability.
When the call for the transplant comes you will want to be spiritually healthy and physically fit. Good muscle tone makes you a better candidate for surgery; a positive outlook indicates will.
You cannot quit, cannot quit. This life may be the only consciousness of which we may be aware. Alternatively, you don’t want to show up in the afterlife as someone who did not care. We may need a friend who will lead us to making positive choices because one of the most crippling side effects is hepatic encephalopathy (the fog that settles on the brain).
. . . become the absolute, best, surgical candidate that you can be. . .
I didn’t take an official poll, but I’m pretty sure that everyone universally agrees that PSC stinks. There’s just nothing pleasant about it. I can hardly wait for the day when there is a cure found for PSC, or at least an effective treatment that doesn’t involve looking down the jaws of death and hell before receiving a transplant. I would do cartwheels for a drug to even slow the progression of PSC. But alas, there is currently nothing of the sort to be had, so we are stuck muddling through it the best we possibly can.
So, everyone has tons of advice on how to muddle through this disease and I’m no exception. My main advice to you, be you a person with PSC, or a precious caregiver, is to become the absolute, best, surgical candidate that you can be. It makes sense. If you have PSC and are looking at having a transplant in the future, you will want to be in good shape so you can recover all the more quickly. If you are anyone else, not a recipient, you want to be in great shape so that you will be a fabulous donor, live or deceased, should the opportunity arise. (I’m praying that I die in a way that all my organs can be, as Ricky Safer puts it, recycled.)
With this goal in mind, the things you need to do to deal with PSC should come into a sharper view. Yes, diet, exercise, and lose the flab. Yes, obtain good insurance and get out of debt. Yes, develop great relationships and spread out your emotional support base. Yes, pray and establish a spiritual rock of support with God. Yes, pursue your dreams, and choose to live a high-quality life no matter what your situation dictates.
Unfortunately, there’s no magic formula to achieving supreme surgical candidacy. There’s only steady, diligent work to improve our lifestyles. It’s a consistent determination to make the best of our lives that will make the greatest overall difference. It really does come down to the little things we do every day.
So, don’t just take a walk. Take a walk holding your precious loved one’s hand. Don’t just get out of debt, but be generous in giving and sharing with other people. Forgive and pursue forgiveness. Mend regrets, and free yourself up to work and progress in those areas that you can control. You might have precious little, but find sanity, resolution and peace where you are, and with what you have. And always, work to improve in some way, each and every day. God Bless.